Anyone here dealing with peripheral neuropathy?

I began feeling pins and needles in my feet, up to my knees about 5 years ago, so I met with a neurologist, and he diagnosed idiopathic peripheral neuropathy. A year or so later, numbness became more pronounced in my toes and the balls of my feet. Next came the burning pain. That's where I am today. I've tried every medication used to treat neuropathy, with no effect - except for Lyrica, which made me incoherent, and put me in the hospital for 3 days. I landed on Cymbalta (duloxetine), the last option on the list, and I've been taking morphine sulfate contin for a couple of years. I tried marijuana one time, and it reduced the pain noticably. But, the cost is too high for me to consider taking it. I use Lidocaine cream at bedtime, and it helps me go to sleep, and sometimes I'll wake up from the pain and put more cream on my feet. I have a blanket lifter that keeps the blankets off my feet, and sometimes it helps to wear a loose pair of socks to bed. It hurts my heels to lie on my back, so mostly I lie on my side, with my feet either on a pillow, or hanging off the pillow but not touching the bed. The soft pillow gives me momentary pleasure, to be relieved from the pain, if only for a couple of minutes.

I started taking cymbalta after I was already on morphine sulfate contin, and after a couple of months I wondered what the Cymbalta would do on its own, so very slowly weaned off the morphine, but the pain was too bad, and after a few weeks off it, I started taking it again. I was taking 30mg 3x a day, but when I restarted it, I so far have only gone up to 15 mg 3x/day. I know many people are paranoid about opiates, but for me, it helps the pain, and I've found I can get off it without any signs of dependency. I'm in the long, excrutiatingly slow process of getting a spinal cord stimulator implant, which has the potential of reducing the pain.

Jim

I began feeling pins and needles in my feet, up to my knees about 5 years ago, so I met with a neurologist, and he diagnosed idiopathic peripheral neuropathy. A year or so later, numbness became more pronounced in my toes and the balls of my feet. Next came the burning pain. That's where I am today. I've tried every medication used to treat neuropathy, with no effect - except for Lyrica, which made me incoherent, and put me in the hospital for 3 days. I landed on Cymbalta (duloxetine), the last option on the list, and I've been taking morphine sulfate contin for a couple of years. I tried marijuana one time, and it reduced the pain noticably. But, the cost is too high for me to consider taking it. I use Lidocaine cream at bedtime, and it helps me go to sleep, and sometimes I'll wake up from the pain and put more cream on my feet. I have a blanket lifter that keeps the blankets off my feet, and sometimes it helps to wear a loose pair of socks to bed. It hurts my heels to lie on my back, so mostly I lie on my side, with my feet either on a pillow, or hanging off the pillow but not touching the bed. The soft pillow gives me momentary pleasure, to be relieved from the pain, if only for a couple of minutes.

I started taking cymbalta after I was already on morphine sulfate contin, and after a couple of months I wondered what the Cymbalta would do on its own, so very slowly weaned off the morphine, but the pain was too bad, and after a few weeks off it, I started taking it again. I was taking 30mg 3x a day, but when I restarted it, I so far have only gone up to 15 mg 3x/day. I know many people are paranoid about opiates, but for me, it helps the pain, and I've found I can get off it without any signs of dependency. I'm in the long, excrutiatingly slow process of getting a spinal cord stimulator implant, which has the potential of reducing the pain.

Jim

I began feeling pins and needles in my feet, up to my knees about 5 years ago, so I met with a neurologist, and he diagnosed idiopathic peripheral neuropathy. A year or so later, numbness became more pronounced in my toes and the balls of my feet. Next came the burning pain. That's where I am today. I've tried every medication used to treat neuropathy, with no effect - except for Lyrica, which made me incoherent, and put me in the hospital for 3 days. I landed on Cymbalta (duloxetine), the last option on the list, and I've been taking morphine sulfate contin for a couple of years. I tried marijuana one time, and it reduced the pain noticably. But, the cost is too high for me to consider taking it. I use Lidocaine cream at bedtime, and it helps me go to sleep, and sometimes I'll wake up from the pain and put more cream on my feet. I have a blanket lifter that keeps the blankets off my feet, and sometimes it helps to wear a loose pair of socks to bed. It hurts my heels to lie on my back, so mostly I lie on my side, with my feet either on a pillow, or hanging off the pillow but not touching the bed. The soft pillow gives me momentary pleasure, to be relieved from the pain, if only for a couple of minutes.

I started taking cymbalta after I was already on morphine sulfate contin, and after a couple of months I wondered what the Cymbalta would do on its own, so very slowly weaned off the morphine, but the pain was too bad, and after a few weeks off it, I started taking it again. I was taking 30mg 3x a day, but when I restarted it, I so far have only gone up to 15 mg 3x/day. I know many people are paranoid about opiates, but for me, it helps the pain, and I've found I can get off it without any signs of dependency. I'm in the long, excrutiatingly slow process of getting a spinal cord stimulator implant, which has the potential of reducing the pain.

Jim

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.

What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.

There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.

What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.